Hi-
I'm glad we have this new area on the board. I've been diagnosed with lung mets, originally it was thought that I was all clear, but a scan in May found lung mets, which were probably there before and just too small to have shown up on the scan. It's incurable and the doctors are saying a few years if things go well. Right now I'm on Cisplatin and Erbitux.
I used to post with questions when I was in radiation, but since getting diagnosed again I didn't want to talk about it on here because if I were someone just finishing treatment I wouldn't want to hear about someone like me.
Anyway, just wanted to say hello to everyone, and especially to Liz and Amy I always have read your posts and you guys have been through so much yet still manage to dole out good advice and kind thoughts, and I really admire you both.
Also, Minnie, I am sorry you are going through this again, and I will say that so far the chemo has not been bad at all and the anti nausea medicines are really good nowdays. I'd compare it to the kind of nausea you have when pregnant, I eat a lot of small meals and that helps. I hope it goes well for you.

So...thanks for listening, and I look forward to talking with everybody.
Melissa

Melissa,
Thank you for posting--yours is the first post I've read where someone says they have been told it's incurable. I sincerely hope your chemo goes as well as your docs have predicted.
Maybe a field called 'Living with incureable Cancer' might be an idea?
My cancer was first diagnosed as oral, then the fact it's Primary in lung with mets to jaw changed treatment course--so the opposite way round to yours!
Are you feeling well at the moment??

Brenda

Hi Brenda-
Thanks for the post. Wow, I read some of your posts and I'm sorry for what you are going through. When they found the lung mets I kept asking them if they were sure I didn't have lung cancer that spread upwards, but they said that was definitly not the case.
You know, when they first said "incurable" I didn't really understand what it meant, and it's still hard because there's a such a huge range of how long people live. At my last appointment when I asked about the prognosis I got a little lecture on "focusing on daily quality of life" and "understanding how serious the situation is", of course followed up with the "hope for a miracle" clause. Doctors....even when they say all they can you still feel like crap!
Actually, I feel good right now which is why it's so hard to understand. There are many small tumors so I don't feel them yet, no trouble breathing or anything. I get chemo every three weeks and that makes me feel run down, tired for a few days. The Erbitux doesn't have any effect on me except for the acne/rash. I look like a teenage boy with a breakout!
I've gotten the chemo postponed twice already for low blood counts, which is frustrating but I try to keep it in perspective.
How about you? Do you feel pretty good day to day?
Melissa

Hi melissa.Good to see you and glad you fel comfortable posting on this new board.Sounds like you and Bren can be a real help to each other i will follow your progress with interest and who knows melissa miracles have to happen sometimes

love liz

I so agree Melissa--I feel fine today--or certaily much better than I did before my blood transfusion--I'd had about 10 days where I could barely move off the sofa without getting breathless--but that was definitely the anaemia and not the cancer!
The nurses asked me one treatment day--'Do you feel this is helping?'
Didn't really know what to say as I felt fine anyway before treatment started!!
Now my jaw is no longer swollen, no-one would know I have cancer--I go out for meals, walks when on my 'rest-weeks' and do some housework and gardening. I don't think I could cope with going back to work (tho was semi-retired and only doing 2 days anyway!), but generally, yes, my 'battle' is to keep my quality of life as good as I can for as long as I can and have mostly stopped worrying.
I did go thro a phase of refusing to buy any clothes, or making any plans for Christmas etc., but hell, my first jaw symptoms were in January, it's now October and I've had to get my hair cut a good few times!!!
Motto now is 'Be Prepared for the worst, Hope for the best!'

Where in CA do you live? My daughter is in Huntington Beach!

Brenda

Hi Melissa. My husband was dx with a recurrence in March of this year. His original dx was June 06, which was followed with surgery, then radiation and chemo. The recurrence started with back pain early this year, which we later learned was a tumor at is 4th right rib. He also had multiple mets to his lungs and a spot in his neck and a few other places. For us it was tougher than the original dx. Doctors suddenly go from optimistic and tossing around the cure word to being "so sorry." I could barely stand it when they would give us the puppy dog eyes.

I finally arrived at the conclusion that modern medicine has terms like treat and cure, but we as people still have terms like heal and healthy available to us. Joe's cancer is only treatable (according to the docs), but he is healthy and healing. Starting in April, he began weekly chemo infusions of carbo/taxol/5FU, and Erbitux. He is also receiving complementary treatments to help with side effects and boost immunity, and Zometa to strengthen bone (every 4 weeks). To date, he is doing great. He is working part-time, exercising (even doing some light jogging), and doing stuff that he enjoys. He doesn't have the same energy level as before, but this is nothing like the chemo experience the first time around. Other than the nausea med that he gets on infusion day, he doesn't take anything for that or for pain. We attribute much of this to the complementary treatment. He had his first scan at the end of June. After 12 weeks of treatment, the tumor in his back went from 68mm to being completely gone! He went from multiple lung mets to one mass that shows no PET activity and has shrunk by 40%. Everything else is clean. The report described it as a complete response to the treatment. His doc said his results were remarkable. We think they are heaven sent.

So, I'd like to say, don't let anything or anyone make you give up on the healing powers that are within you. We are designed by our very nature to heal. Don't let anything distract you from this fact. Combine the best of all modalities then believe that anything is possible.

Wishing you healing and health.

Chris

Hi Chris,
I was so glad to see your post and hear that Joe continues to do well. What wonderful news!! You two worked hard to find the very best treatment for Joe, and I applaud your persistence to come up with the right combination of therapies.

Other than needing continued physical therapy for spinal nerve injury during his neck dissection, Mike feels good and so far his scans and physical exams show no evidence of disease, for which we remain thankful.

My best to you and Joe,
Tricia

Hi Chris-
Thanks for your post- it is encouraging to hear stories about other people who are doing well on their treatments. I'm getting scanned again in a few weeks to see how it's going, the first scans showed slight shrinkage but not much. Hopefully it is just too early to tell, after only a few weeks. It's true, there's all these terms like treatable, curable, terminal, palliative and it's hard to sort out how to feel about it. I'm trying just to take it one day at a time and hope for the best.

Brenda, I like to garden and do stuff around the house too- during the chemo days I take it easy and watch alot of movies. But the rest of the time I feel ok so I try to keep busy. I quit my job because I have a 1 year old and I figure any extra energy I have I want to give to him. Luckily we have a daycare where he can go on the days I'm getting treated or not feeling up to chasing him. So I tell people I'm "Retired" because I'm not really a stay at home mom! Oh, and I live in the San Francisco Bay Area. It's about 6 hours north of Hungtington Beach.
Thanks again for the replies, it is nice to have some folks to talk to about this stuff!
Melissa

Hi Everyone,
Reading your postings gives me such mixed feelings!
Melissa, you are so young to be dealing with this, bless your heart. I'm praying hard for you, keep your chin up and keep fighting. There are so many new treatments on the horizon, none of us should ever even think of the words "give up".

Chris, your posting inspired me. If they find that I have lung mets (I'll know for sure tomorrow) then I am going to keep your husbands situation in my mind and use it to give me hope.

Brenda, I've been praying for you since day one and will continue to. We can be prayer buddies

Love to all,
Minnie

Just closed my eyes tight and sent healing love and thoughts to everyone
Brenda

After much lost sleep and the most anxiety I've felt thus far...........the report from my Spiral CT showed it is scarring in my right lung and not cancer. I got the call at 5:00 today, during the prayer circle at the end of my Varsity cheer teams practice......how cool is that.

The PET I had done showed the spot in my right lung, with an SUV uptake of 4.5. When I read about the PET and saw that 2.5 uptake and above is usually malignant, I felt absolutely hopeless. SO, it is true that we need to step back a bit when we get a PET scan result and await further testing. PETS are awesome tools for our cancer, but they can also cause us tons of anxiety!

My surgery is on September 25th, 5:30am arrival time......which sucks, I'm so not a morning person. We're leaving here as a family on the Sunday before and spending Sunday in DC and then Monday doing some fun things with the kids in Baltimore. The girls will stay with us at a suite until Thursday morning than they will go back home with one of our older girls to get back into school.

I like having a plan in place, I like what Hopkins has to say, they have even included re-radiation in my treatment plan. I'll keep everyone posted.

Thank you for all the support through this, it's certainly been a hectic, scary time.

Love,
Minnie

Minnie,

That is great news - I am so happy for you! I take comfort in the fact that my CT last week showed nothing in my lungs as well. It makes me feel like I have a fighting chance. Great idea to have some special family time before the surgery. Our family loves camping and the outdoors, so my husband is taking us camping this weekend for a little down time. My 2nd neck dissection surgery is set for 1:30 Sept 18 -I wish my arrival time was as early as yours -I don't get there till 11:30 and of course nothing to eat or drink after midnight - no food is OK, no drink is going to be extremely difficult-my mouth will be glued shut by that time. I sip water constantly - guess I'll just have to swish and hope I don't swallow! How do you plan to deal with that issue? I wonder if a couple of ice chips from time to time will be OK? Guess I can call my nurse, but I have a feeling I know what she'll say.

I wish you well with your upcoming surgery-I'll be thinking of you. You sound very upbeat and optimistic. Today the shock and fear has worn away quite a bit. I had to take an Algebra test this past Tuesday and I was in a mess emotionally - thought I had bombed the test and was so upset because I just started back to school, want to become a clinical dietition to work with head/neck patients and now have the cancer recur, not to mention dealing with my children's reactions. Anyway, got that test back today and made a 93 - I am taking that as a sign that I can kick this cancer again, stay in school and continue with my plan. Here's to the fight - you have been an inspiration since I joined OCF a couple of years ago and I wish you all the best.

Pam

Minnie what good news to start the day with,god bless,
Pam, hang on to Minnies coat tails its gonna be a bumpy ride, but keep each other safe.

love liz

Hi Pam,

September 18th is a wonderful day you know........it's the day after I gave birth to two of my daughters 10 years apart. I had Charity on September 17th 1980 and then had Mercedes on September 17th, 1990..........SO, the 18th is a special day and will have good vibes for you. I'll be thinking of you Pam and hoping for good results.

I went back to nursing school when I had just my six oldest daughters. We were not planning anymore children and I SO wanted to finish my schooling I had started after high school. So, I took the leap and went back. I've always loved school and I was in Heaven to say the least. I had one year left to finish my degree and I was so excited. Then, after a night of not being safe, we found ourselves expecting our 7th daughter, Samantha. I was heartbroken, pissed, not happy, you name it in a negative light and that was me! I didn't think they would allow me to finish the year out, I am oldschool from Maine and they used to make the girls that "got pregnant" leave school. Well, of course they had no issues with me finishing and I not only finished, but delivered Sam 9 days before my graduation AND was Valedictorian of my class. Such a proud moment for me.........as I sat there in my nursing whites, my chest about to burst from breast milk, the usual oversized pad we all have to wear after childbirth, and worrying nonstop that she would cry in the front row with my husband and I'd have to leave the stage to go nurse her. It wasn't the way I imagined my graduation but it sure ended up the most perfect day of my life. Sam is 13 now and loves to hear her dad and I tell that story!

So, stick with school, no matter how sick you feel, no matter how horrible a mindset you may have. It's something for YOU and it will make you feel good.

Keep me posted,
Minnie

Liz, you are right, it's going to be a bumpy ride but I like to call them speed bumps........we all get over them eventually, just slowly.

How are you doing? I'm glad this board and the people on it are helping you deal with your grief. I bet Robin is up there just a bragging about his wife.

Love,
Minnie

Oh Minnie--I'm so pleased for you--and to get the news during Prayer Circle is truly awesome!
So c'mon, you and Pam--get those healthy lungs going on some deep breathing and relaxation and you'll be in and out of that surgery in no time!
Brenda

Minnie,

Thanks for the encouraging words - thought I'd tell you I think Sept 25th is a good date too-that's just 3 days before my wedding anniversary - 23 years this year. September is one of my favorite months of the year. I sure don't know how you managed to go back to school wtih 6 children at home and then one on the way-you are definitely one strong lady! It's been hard enough with just one left at home (he's 15), one that just started college (she's 18) and one that just graduated college (she's 22). Of course, I turn my phone on silent when I go into class and everytime I check it after a class, one of the girl's has called and when I call them back,they're somewhat aggravated that I didn't answer the first time! They are so used to me being here for them whenever they need me, they don't like having to wait! They're starting to get a little better and both have told me they are proud of what I'm trying to do, so it's all good. My son likes to compete with me on grades, which is not so bad because he is actually studying more and his grades have been higher than usual.

I actually told someone yesterday that this surgery and new treatment was "just a bump in the road", so we are on the same wavelength there. Did you sleep any better last night? I have slept through the past 2 nights finally and I haven't cried any the past 2 days. I think Tuesday was my main breakdown day and I have been better since then. Please try to eat well between now and the 25th. I know you have lots of coaches and cheerleaders helping you in that department! I have to really push myself in that area because I don't get hungry and it's still not an easy, automatic thing for me to do. I have swallowing issues since radiation -I can eat pretty well as long as it's carefully planned and I have lots of time. I can't eat on the run nor is there any mindless snacking. I used to be an eater whenever I was stressed and I don't have that crutch anymore. So just be sure to eat and get some good nutrition in your body.

Brenda, thank you for your kind words - I know you are going through some tough times as well. I have been doing some deep breathing when I feel panicky and it does help. I am going to do a little hiking this weekend and that always makes me feel better to be in the great outdoors and I live in a beautiful part of the country - lots of lakes, hiking trails, etc. I wish you all the best with your treatment-take care and keep on posting. This new board is a great avenue to get some of these scared feelings out in the open and I am grateful for it. Thanks to Brian for adding it.

Pam

Minnie -
From what you have written, you are now clear of cancer, even tho a recurrence was suspected from the CT scan? Are you having surgery to clear out the scar tissue? I think this is miraculous news, Minnie - you are such a kind and gentle person, I wish you many decades of enjoying life with your children. God bless you, Minnie! Hugsssssssss, JaneP

Minnie-
That is great news!
Pam, I totally understand about the late time of surgery..I had a CT guided lung biopsy at noon one time and it was the same thing, nothing to eat or drink after midnight. Brutal! I kept some water close by to swish and spit which helped. Also they let me take a little sip with the medications beforehand when I explained to them about the dry mouth.
Somtimes it's those little things that get to you!
Melissa

You all are amazing. My DH was to start saline induction today in prep for chemo tomorrow, but they had trouble with the new port, so back we were to the hospital for xray and checkup by the doc. He wants it to rest for a few days, so chemo start is postponed till next week. That did not break my husband's heart It's good to have a place to post. I almost never post on the other boards because I don't want to scare the newbies or anyone else.